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RSV: The dangerous disease parents aren’t talking about

We thought she just had a simple cold. Ever was our fourth baby, so we weren’t terrified by a sick infant, just alert. She was only 1 month old, though, so our alertness quickly turned into fear on the fourth night, when her breathing became troubled. 

We walked into the hospital feeling increasingly anxious but confused. I had a growing fear that something was terribly wrong with our baby, but I couldn’t understand how what was appearing as a cold, or maybe a sinus infection, could be serious.

In the ER, the doctor was unsure of her exact diagnosis. “She’s OK now,” he said, spreading out his fingers as if to say, but later? We had her admitted. Her bloodwork was drawn; we thought we’d be there for a day, maybe two. At that point her oxygen wasn’t low. She was having difficult “work of breathing,” the doctors call it: How hard is the body working to keep up a normal supply of oxygen, and is it keeping up a normal supply?

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That night, my husband stayed up all night watching Ever sleep on my chest, her head bobbing up and down dramatically with each breath, each breath more of a struggle. By the next day, she was on oxygen and unable to nurse. Her tiny mouth would attempt to suck, and she would slip back into sleep. She slept for seven hours straight, her body exhausted from breathing.

The diagnosis was RSV: respiratory syncytial virus. We’d never heard of this virus, although I know now that it’s the most common cause of lower respiratory tract infections among young children. Essentially a bad cold, it’s harmless in healthy, older children, but in infants, toddlers or children with weakened immune systems, it can be life-threatening (and as yet there is no vaccine).

The mucus from RSV is unusually viscous and soaks the lungs and tiny tubes of an infant until no oxygen can move in and carbon dioxide cannot move out. Carbon dioxide levels in the blood begin to soar, and the baby begins the work of breathing — retractions of the abdomen underneath the rib cage and the soft pulsing spot in the throat.

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In severe cases, babies may require an IV, supplemental oxygen, suctioning of mucus from the airways or breathing tubes with mechanical ventilation. According to the CDC, most children hospitalized for RSV are younger than 6 months of age.

By the time doctors decided Ever would need an IV, it took more than an hour, with four different nurses and doctors attempting to place the IV in my newborn’s arms, legs, feet and hands, before a cardiologist was called in and was finally successful. My husband and I took turns rubbing Ever’s head and murmuring comforts into her ear as she screamed; one of us would comfort her until her desperation broke us down, and we’d switch off, stand at the wall and cry.

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Later, we had to again let her be poked for blood samples — and later again, for a test measuring the level of carbon dioxide in her blood. As the group of doctors and nurses hovered over Ever and I kissed her cheek, she would find them with her blue eyes wide open, actively seeking a face and then staring at that doctor or nurse while crying. It was astonishing to me. It was as if she was forcing them to acknowledge her: I am here, she was saying, and this is hurting me.

The results of the test came back. Desirable or acceptable scores would be in the 50s; Ever’s score was in the 70s. The doctor came into our room. “We are probably going to have to ventilate her,” he said. We were dumbfounded. Our infant on a ventilator? When illness happens this quickly, it’s hard for the mind to keep up, as some amount of shock factors into how well the mind is processing information. Two days ago, we had a baby with a cold. Now we had a baby on oxygen, a baby traumatized by repeated stretches of fear and pain who would now most likely be ventilated. At night, I curled up in Ever’s crib, my husband on the chair. The nurses let us break these rules.

All I could think when I crawled into Ever’s crib, when I held her tiny body encased in tubes, was that if it weren’t for modern medicine, my baby would be dead. Waves of gratitude for science, for our doctors, nurses and the miracle of emergency care washed over me. We had never been confronted with serious illness in any of our children before, and here, in this last and most vulnerable child, came the spectre. Other children on our same floor were ill with cancer, and ventilation — which seemed terrifying to us — was the least of their worries.

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A NICU nurse came up into Ever’s room after hearing about her case and recommended we try high-pressure air mixed with oxygen in addition to Albuterol every two hours inserted into the same machine and vaporized into the air stream. It worked. After a total of nine days in the hospital, we took our girl home.

Every winter, I look at the mothers with their infants out and about. When I see a small baby with mucus smeared on their nose, fussing in their mother’s arms, I want to ask, “Have you heard of RSV?”

Before you go, check out our slideshow below:

Incredible birth photos
Image: Marijke Thoen

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